Budesonide - Long term?
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Re: Budesonide - Long term?
I was on Budesonide for 15 years. I decided to wean off of it Nov and Dec 2023, sorta under my GI's care. After completely getting off, my body went into adrenal crisis. I had to make a tough decision to call 911 because I was fading fast. The hospital told me I could have died. They explained to me that the adrenal glands naturally produce a steriod, hydrocortisol. Budesonide had suppressed the adrenal glands from producing, so when I took myself completely off budesonide, my body went onto crisis because then I no longer had any steriods in my body. I was extremely dehydrated when I arrived at the hospital as I had been throwing up and dirrehea for a solid 3 hours. So after pumping me with fluids, and giving me the steriod, hydrocotisol, after 2 days I started feeling better. I am still on hydrocortisol to hopefully get my adrenal glands working again, but no guarantee. My GI is also trying azotheoprine in place of budesonide. I don't think azo it doing me any good. I think it's causing bloating and constipation and as a result of that, comes the diarreah. I don't want to get back on Budesonide so I take 2 or 3 Imodium to stop the diarreah, which in turn, starts the whole cycle again of boating, constipation and then the diarreah comes.
Re: Budesonide - Long term?
Hi,
Welcome to the group.I'm sorry to read about your adrenal crisis. Were those 15 years at the full dose? And would you mind describing the details of exactly how you weaned off budesonide, because that may be very important information for others to know.
We usually recommend an extended taper period. Following the usually prescribed weaning process, we recommend a week or two of using one 3 mg capsule every other day, followed by a capsule every third day for a week or two, followed by a capsule every fourth day for a week or two, followed by a capsule every fifth day, etc., depending on how long a patient feels they need to draw out the taper in order to remain in stable remission.
Tex
Welcome to the group.I'm sorry to read about your adrenal crisis. Were those 15 years at the full dose? And would you mind describing the details of exactly how you weaned off budesonide, because that may be very important information for others to know.
We usually recommend an extended taper period. Following the usually prescribed weaning process, we recommend a week or two of using one 3 mg capsule every other day, followed by a capsule every third day for a week or two, followed by a capsule every fourth day for a week or two, followed by a capsule every fifth day, etc., depending on how long a patient feels they need to draw out the taper in order to remain in stable remission.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: Budesonide - Long term?
Oh my goodness, donnagail, I'm so sorry to hear about your experience with Budesonide. Thank you for sharing your story, it's a great warning for others. Hope you're doing better now and that your adrenal glands will recover with time.